FUNCTIONING LABELS; Why They Are Harmful and What To Say Intead
If you teach, parent or know folks with developmental disabilities (such as autism, intellectual disabilities, Down syndrome, etc.), you've probably either used or heard them described as "high" or "low" functioning.
Since every developmental disability falls on a wide spectrum, it may seem convenient to classify people using these functioning labels.
But they actually aren't helpful - and may even be harmful. Let's learn why!
Functioning Lables are Misleading
These labels represent how much the person's disability affects society, not how the person experiences life.
For example, a student who stims loudly in public will be thought of as "low-functioning." This is in contrast to a student who masks their stims but may have a harder time with self-care.
The more a person masks, the "higher" functioning we classify them. Really, what we're saying is that the person who displays their disability to the world without trying to hide it must be "lower" functioning.
In addition, individual needs can change over time. They can also change depending on different pressures and environments.
The term "functioning" is subjective and therefore a misleading term!
Labels Are Used For Some Traits and Not Others
Functioning labels seem arbitrary.
For example, a student might be marked as low-functioning due to their need to communicate with an AAC device, despite having an average or above average IQ.
(By the way, it is more difficult and less reliable to test the IQ of someone who is non-speaking given our current testing methods, so IQ is also difficult to assess).
If a person is non-speaking, the assumption tends to be that this person is non-communicative or unable to understand what's going on around them. It is hugely problematic to not presume competence due to a person's ability to speak verbally. This can lead to denying a person of their autonomy.
Meanwhile, a vocal student with a high IQ (who has an extremely difficult time with sensory processing and self-care) is marked as high functioning. They are given less significant services, including less time in school and reduced accommodations. They may even be expected to just "figure it out," despite their internal struggles.
Can you see the issue?
Why do we determine low and high functioning primarily after looking at how a student communicates or how high or low their IQ is?
There is a LOT more to disability than these two factors.
Labeling is Stigmatized & Outdated
Functioning labels originate from the 1980's, when researchers used these terms to differentiate between autistic folks with and without an intellectual disability.
First of all, IQ tests are not the number one marker of disability. IQ doesn't necessarily impact functioning in a binary way. And when we call some people "high functioning" instead of "low functioning," it is seen as superior.
Superiority of functioning is not something we want to perpetuate.
Secondly, "low functioning" folks face a large amount of stigma. We hear "low functioning" and equate it with intelligence or being incapable in general.
Infantilization, focus on deficits, and lack of autonomy tend to be more common with this group. Teachers, parents or other support staff are more likely to talk about the "low functioning" folks right in front of them, assuming they can't understand or aren't paying attention.
It also paints the picture of a disabled person on a binary line, from low to high functioning, instead of a more holistic view showing a person with diverse needs & strengths, which would look more sphere-like. This is a massive oversimplification. A spectrum doesn't need to be line. It can be like a color wheel!
Check out the image below to see an example. This is a visual to demonstrate how non-linear disability is. Everyone, disabled or not, will have differences in each of these areas, and it can change due to the circumstances or more generally over time.
What Can We Use Instead?
It's better to use a person's disability (i.e. he is autistic, she has Down syndrome, etc.) than to use functioning labels.
But sometimes we need to describe a person's level of support needs in an area. In these cases, try to talk about the specific supports or level of need in the areas you mean.
Someone shouldn't be classified as high or low functioning. Instead, you could say "she requires significant support with feeding and dressing" or "he has great communication skills unless he is experiencing sensory overload, when he requires support to regulate."
While this is still somewhat subjective, it doesn't classify the person overall as being either low or high functioning, and takes into account a more holistic view of the person.
You can be neurodiversity-affirming by stopping the use of functioning labels. Spread the word for a more inclusive world!